I had wanted to write something soft and sweet about Hento, because that’s what he was, but apparently that’s just not yet where I’m at. The last two and a half years (plus) have really kicked me in the teeth, and to lose my emotional support animal in that manner at that time just…
Let’s say there’s a lot of pain and anger, still.
The estate chaos is finally over, Autumn is peeking around the corner, the household is looking at our next steps together into a scary but exciting stage, and I’ve unexpectedly fallen in love with another dog far sooner than I expected to be capable of it.
Life goes on. I imagine my rage at the universe for what it did to Hento will cool eventually.
As we enter a new season here at Château Dinosaur, my thoughts turn again toward getting a handle on my most problematic post-thyroidectomy life change: brain fog.
It has been difficult – in part because of the brain fog – to try to convey to the people around me just how serious the issue is. We’ve all felt “a little out of it” before, or had memory blips, or been so fatigued after a late night that it’s hard to think straight, so people tend to assume they know what brain fog is and that it’s possible to just rest up and recover from it. It’s not. Also the term, “brain fog” sounds unserious and made-up, in no way capturing the debilitating and very real effects of losing your ability to marshal your higher brain functions.
With COVID-19 still ripping through the population here in the US, leaving millions in its wake to struggle with the effects of long-COVID, the seriousness of brain fog has finally been garnering mainstream attention. People dealing with various chronic illnesses like ME, CFS, and yes, hypothyroidism, have tried for decades to get the medical establishment and the general public to take this symptom seriously.
When I read this article from Ed Yong at The Atlantic, about brain fog, I legitimately shed tears. Brain fog is real, it’s a medical condition, it’s not psychosomatic, and it is absolutely life-ruining. We need people on this, urgently.
Within two months after my thyroid was removed due to cancer in 2020, I stopped feeling like me. Stopped being able to read more than a sentence before losing my handle on the words. Stopped being able to formulate complex thoughts. Stopped being able to write. Started making simple mistakes in my daily tasks, forgetting my vocabulary, feeling vacant. I felt like I was disappearing, had real fears that I was experiencing early-onset dementia.
At the time, I was trying to put together the release of my second book. It became impossible to do things like write press releases, communicate with reviewers, or contact press. I was supposed to do a Q&A – couldn’t answer questions about my own work. Couldn’t remember my own work. I still can’t. The entire release collapsed into a sad nothing, along with my hopes of launching a successful career as a novelist.
These passages from Ed Yong’s excellent article struck a knifeblade of truth right into my heart:
“Her memory, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult. Her inner world—what she calls ‘the extras of thinking, like daydreaming, making plans, imagining’—is gone. The fog ‘is so encompassing,’ she told me, ‘it affects every area of my life.’”
“At its core… it is almost always a disorder of ‘executive function’—the set of mental abilities that includes focusing attention, holding information in mind, and blocking out distractions. These skills are so foundational that when they crumble, much of a person’s cognitive edifice collapses. Anything involving concentration, multitasking, and planning—that is, almost everything important—becomes absurdly arduous. ‘It raises what are unconscious processes for healthy people to the level of conscious decision making.’”
The article does offer a ray of hope: apparently brain fog can be reversed with proper care. It’s possible that I might recover my stories one day. All two of the people waiting for me to write the third book in my trilogy will no doubt be pleased by that. I would just like to feel like me again. It might sound weird to say I want to hear the voices again, but I’m a writer. Was a writer. Want being a writer back.
The 2020s have taken enough from me already. They can’t have my internal life too. I refuse.
Autistic Wordpainter 